Tuesday, May 21, 2013

Cardiology Appt, Valve replacements being recommended.

It wasn't even a week ago Dr.Bragg asked me  (again) when I thought Dr.Earing was going to green-light going ahead and doing the valve replacements (she is concerned I think bc although her surgeries will be more complicated from a blood thinner stand-pt post-valve replacement now the anesthesia part is so much more difficult and really time intensive.) I think to she is curious if that will have any impact on the headache symptoms?  Regardless today Dr.Earing walked in and said he thought it was time and no medication adjustments or additions we did where going to make a big enough difference and he felt we needed to do this. I guess on a thankful note he must also have figured out there really isn't anyone in the MPS community w much experience in Cardiac-valve surgery and so he was recommending a Cardio-Thoracic surgeon at his hospital (a Mike Mitchell) who he feels has experience w complex heart surgeries/complex underlying, complicating issues and is who he plans to refer me to. He did say that he had a few concerns the biggest being the TPL shunt will have to be moved as they use the same area during open heart surgery for tubes/wires/monitors (unsure what exactly) and so 1. he had already tried callling Dr.Bragg when I went down for a chest Xray after the appt (his nurse came down to Radiology to ask me something) and 2. He was a little concerned about the shunts and if Dr.Bragg when he talks to her felt like she would need to be present during surgery or immediately after he would reluctantly refer me to the Cardio-thoracic surgery dept at UW so I was where she would be available. He would really like it to be at CHW though and if Dr.Bragg doesn't feel she needs to be there during surgery/doesn't feel there will be an issue w the shunts then he would like the surgery sheduled during one of his on-service calls so he is around and can make sure everything is being watched/monitored and taken care of (he's pretty particular but it's also what makes me really appreciate and like him as my Cardiologist + trust his judgement). I am wondering since we apparently do have to move the TPL shunt for the valve surgery if once I am healed from the open heart surgery and if I had the same stomach symptoms recur as before we moved the TPL shunt from the peritoneal area would we be able to replace the catheter back in-to the pleural space down the road? (I don't know, it is also possible as I think I may have wrote about last week that the stomach symptoms where more from the CNS infections and less from the actual shunts/CSF absorption). Then again, who knows maybe I would do well with both shunts in the stomach area again. Can't help but wonder. :)

He wasn't sure if the Port (for IV access) would be ok during surgery but just said it depended and bc they would have to place so many wires/monitors and lines during that it might have to be removed but would more or less likely be an un-known until they where doing surgery.
He is keeping the meds I am on the same (lasix 40mgs, 2x's per day, Bisoprolol (a beta blocker) 1x per day and Aldactone 1x per day till surgery. He also green-lighted the Hand surgery as long as we do it with only a local nerve block and no general anesthesia. He did add that if we had to do any absolutely necessary surgeries (shunt for instance) then he wasn't opposed to General Anesthesia, just that careful monitoring and fluid mngmt be done which they have been doing since Jan at UW anyway w the Arterial line and careful fluids, etc. His big concern is any surgeries causing congestive heart failure due to fluid overload.

He made the comment this time which kind of surprised me (given past comments) that he didn't think surgery would be the really hard part he thinks the immediate post-op recovery will be the very difficult part. I guess because of the restrictive lung issues, shunts, blood thinner initiation, etc. Fun.. (not really) I am sure it will all be a barrel of monkey's and a load of fun. (sarcasm)

A surgery date will really depend on the shunt stuff so a little variable, he will call me after he talks to Dr.Bragg and I am unsure (I didn't think to ask) if there are any other tests that will have to be done, in the past he had mentioned repeating coronary artery block testing (a pretty simple test w imaging) but he may not do this either, really not to sure. In the mean time I have the quick-brain MRI for her tomorrow because she was thinking about changing out the TPL shunt to a different valve (see last post, no information since last Weds but maybe, hopefully know something tomorrow when the NP resets both shunt valves, am hoping Dr.Bragg might be around I could talk to or the NP knows something. Either way one of my Pastor's at church had asked earlier this week if i'd be interested in teaching VBS the 2nd week of June to which I said I couldn't do monday (bc of ERT) but maybe could move around other things I have already scheduled the other days and would let him know. He was willing to find someone else to tag-team and teach for me on monday if I can do it. I said i'd let him know by Weds afternoon if I could so am hoping to know something from Dr.Bragg tomorrow, I would actually really like to teach this as I would have some of the same kids from Sunday School and is just a week-long 2 1/2 hrs each day. I think the only other appts I have right now that week are post-op Hand fups which can be rescheduled to afternoons I think. I asked Dr.Earing when he thought (a guesstimate) the heart surgery might happen ie fall, winter, etc and he said it really depended how I felt but he was leaning towards sooner. I already commited to teaching SS next fall although w the same teacher from last year and hoping to be able to at most only be out a month or two and maybe if we need to can have a substitute teacher if my co-teacher isn't able to do it the weeks I may be out. Not a big fan of not being able to commit and especially because of health stuff!

I'll update when I know something more,
Thanks for stopping by,


No comments:

Post a Comment